I am currently involved with the ECPC Rare Cancers Action Group which is a new advocacy group organised by rare cancer advocates in Europe. We are developing ways of raising the profile of rare cancers with the European Commission through contact with the Health Commissioner John Dalli. Our first task is to ask him to support us in trying to get policy change in the EU in order to put additional pressure on member states to include rare cancers in national cancer plans. If you would be willing to help us by providing a short bio and picture, so that we can add 'real faces' to the cold cancer statistics then please contact me and I will let you know how.
email me at cmlsupportgroup@gmail.com
Sandy